S4E6 Deirdre OConnor v1 Intro - Welcome to Stoma and Continence Conversations from Coloplast Professional. I'm Hannah, Ostomy Care Associate Education Manager at Coloplast. Working in specialist care, I know that stoma, bowel and bladder issues impact the lives of those you care for. This podcast is here to support your educational needs and help you in supporting your patients. You'll hear from fellow healthcare professionals and experts by experience discuss the latest hot topics in the world of stoma, continence care and specialist practice. This time… The surgeon actually had said to me at the time, we're very sorry, but you're gonna have to have a stoma and a young lady of your age would be considered a medical failure to us. And then I just thought, why should I let this stop me? I'm very happy with my stoma and I would never go back. Hannah - This time we are lucky enough to be talking to Deidre O'Connor, who is one of our lovely Coloplast ambassadors. Hi Deidre. Deirdre – Hi Hannah. How are you? Nice to speak to you Hannah - And you! And we are also very fortunate to be joined by Paul Russell Roberts as well, the Ostomy Care Education Manager. So, hi Paul. Paul - Hi both of you, thank you so much for joining us Deidre, it's a pleasure having you on - thank you. Deirdre - Thank you for having me.. Hannah - So first of all, Deidre, we always do a bit of an introduction for the listeners. So it's a bit of a, what's your name, where do you come from, and a little bit of background about you and your stoma please. Deirdre - I live in Northern Ireland. I have an inflammatory bowel disease condition called Crohn's. I was initially diagnosed with ulcerative colitis in 2010. I had my first stoma when I was diagnosed and around two weeks later I had emergency surgery to have my entire large bowel removed and rectum and that's when I had my first stoma. And since then I've had, I think over 15 surgeries by now. So it's been quite a journey! But I am very lucky to be under the care of some great surgeons. I've had a fantastic stoma nurse by my side, and I'm able to live a very fulfilling life, and I'm very happy with my stoma and I would never go back! Hannah - Do you know what - it's amazing how many people you speak to that, once they've had the stoma, they would never go back. Especially people like yourself that have come from inflammatory bowel disease background, which can be so debilitating, judging your whole life by toilets, everything like that, and having that stoma just gives people their life back. Would that be something that you'd echo as well Deirdre? Deirdre - Yes, definitely. So, I have kind of been on a rollercoaster journey with my IBD diagnosis. I have so far had, two failed reversals as well. But I think because it was 12 years ago, there wasn't really the awareness that there is now about people with IBD and people with stomas. The surgeon actually had said to me at the time, you know, it was all a very negative thing. We're very sorry, but you're gonna have to have a stoma and a young lady of your age would be considered a medical failure to us. So we would really push you towards having a reversal done. And that was the reason why I sort of went ahead with it. But before that, my life was great and I learned, obviously it was a difficult time and getting used to having a stoma, you know, it, you know, it is an emotional rollercoaster. But, a quality of life wise, I was absolutely brilliant. I was living my usual life, before I had my diagnosis and everything. And to be honest, When I went down the reversal route, that's when things actually started to go wrong for me, and that's where a lot of my problems stem from. So currently my stoma is the least of my problems. I have a great life with my stoma. There's no problems with it, and it just allows me to have a life that I never dreamed I would be able to have again. Paul - It's really interesting you're talking about the conversation you had for pre reversal or that period before your reversal. Cause I know personally, whenever I've counselled anybody pre-surgery, pre stoma formation and pre reversal .I'm really, really passionate about understanding that individuals who are having a reversal need just as much time and support as during the preoperative phase as well. You know, it's that thing of understanding all the risks, all the potential complications, and that reversals don't always work. Did you find you had that time to be able to, did you have those discussions during, you know, prior to your reversal? Deirdre - It was sort of pitched to me sort of saying, this is the natural next stage of, you know, your journey. And I had been talking to a couple of patients who said that they had the reversal. You know, it's worked out and they've never looked back. And I kind of thought, well, this must be the natural next stage. But obviously I was told about some risks and things like that. But it was sort of conveyed to me that, you know, having a stoma was a negative thing, especially for someone, a young lady in their twenties. And I thought, and, you know, looking around me, there was no one else in my life that had a stoma, there was no one else I could relate to. And they did ask me, would you like to speak to someone who has had this done before? I was only 25 at the time and I was unsure about what to do. And they had put me in touch with this lady, but she was kind of like in her sixties and we had a phone call and she just sort of, she didn't, didn't really, she just sort of said, yeah, I can go camping and everything's great. And that was it really. So I didn't really get much outta that, and I didn't feel like I had a lot of support to make that decision. And the way it was pitched, it was the natural next step. So I just went ahead with it. And I think if I had any idea of what could go wrong, I never would've went ahead. Hannah - It's interesting you say about that negative opinion of a stoma was even from surgeons and medics and, as you know, Deidre, having had a stoma myself, it's that impact that you failed medical management. And Paul, and I always say, it's not that you failed, medical management's failed you! It's that almost before you even go into an operation, you feel like you've been made a failure in something and that the stoma is the negative impact of that failure. Whereas actually the stoma is, it's the best thing for you. And we've been speaking to some people and they've said that they wish they'd had it done ages ago and they'd not beaten down the medical route and carried on going down the medical route for years, and just gone with the stoma earlier cause it gives you back that quality and it's still there now. But I appreciate what you say even more so sort of 10, 12 years ago, it was even more of a negative thought, I think because there wasn't the empowerment of social media that there is now. I mean, we're so lucky now we have the likes of yourself and the rest of the ambassadors out there that are putting stomas out there. You showing that it is normal and you can lead that normal life. But 10 years ago there wasn't that there… Deirdre - No. And when I looked around the wards that I was in, it was all elderly ladies and they were all there, they all had stomas. And I thought, oh my God, this is not, this is not what I, you know, I'm not at this stage of my life. There must be something else that they can do. And I've always been a very driven, focused person. I had just completed my degree and been accepted onto the PGC, which is the teaching course, so I was all set to do that. I had booked flights to go to Thailand and Australia for the summer, and then I would come back and do my teaching and everything was mapped out for me. And then suddenly I just started having these really bad symptoms. Running the toilet. And then it was sort of one of them embarrassing things, which I kept to myself and didn't tell people about for a long time, and tried to battle on with myself until it was just literally blood coming out in the toilet and it was 30 times a day. And when I went to the hospital, then they diagnosed me, but it was all so, it happened so quickly. It was such a shock. And I never thought in my wildest dreams that I would end up having such major surgery. And, you know, I did probably, I don't know, in my mind there was such a stigma attached to having a stoma, having a bag. And I don't know why, maybe it was society at that time, but my natural instinct was, no, that's the worst thing that could ever happen and my life will be over. But I think if I had have seen all the, you know, positivity surrounding ostomates now and all the accounts online and such a supportive community. I wouldn't have felt like that, you know, but I just felt so different from everyone and it was a terrifying experience. But now, you know, things have changed and that's why I really feel like it's so important and it's my job to try and help other young women who've had had that diagnosis and they're going through this really, it is a terrifying time. And if I can help in anyway, you know, just to try and normalise it a wee bit an show people you can actually have an amazing life. Like I've been on holiday, it hasn't held me back. You know, I have great relationships. I'm able to work and have lots of friends, I'm able to go out. It doesn't, it doesn't stop me doing anything. And I feel so grateful for my stoma. Paul - It's such an empowerment I know from me hearing, you know, hearing your story, it's an incredibly empowering story. Cause you know, when you look back and the rough ride you had at the start, I think is probably an understatement, but that experience you had at the start. But as you said, now you know you are living life to the fullest. And one of the things we like to talk about is things like my firsts. You know, I know other people have spoken to us in the past about, you know, the first time they changed the bag, the first time they went on holiday. Have you got any kind of my firsts that kind of really kind of stick in to your mind? Deirdre - Yes! So as I explained, I've had quite a lot of surgeries, and two failed reversals. And after the second reversal, you know, quality of life was really poor. I was running to the toilet 30 times a day. The pouch, just the internal J pouch, which I had formed, just wasn't working for me at all. I started having a lot of pain and it was picked up on the MRI scan that I had a large fistula, so it’s a pouch vaginal fistula, and it was so painful! So I had surgery for that, and then it was, I actually just said to my surgeon, I just want to get my stoma back and I just want my life back with the stoma. It was so good, and I wish I didn't go down this reversal route. So I went in for surgery in 2017 to have the permanent stoma formed. I knew, obviously, you know, it is quite a big surgery, but it wasn't going to be anything that I hadn’t experienced before, hopefully, and recovery wouldn't be that bad. So I went in, but unfortunately my bowel perforated and I ended up with sepsis and was in intensive care and woke up with two bags. So one was sort of like a mucus fistula. And the other stoma, you know, was my functioning stoma because of high up in my small bowel the perforation had happened. I ended up with a high output bag, which was nearly down to my knee. You know, I thought, oh my God, how am I gonna live like this for the next sort of six months they had told me. It ended up being a year and a half! But, during that time, my best friend was getting married. And we have been friends since we were toddlers, she lived across the street, her family, we've grown up together - we're more like sisters. So for her getting married, and then she asked me to be chief bridesmaid. And they had planned to go away on a hen party to this foreign holiday to Marbella. And I thought, oh my God, how am I ever gonna go away on some girls holiday bikinis, beaches, and all this? These two bags and one down to my knee! And I thought, oh my God, it's never gonna happen. And I told her, look, I'm so sorry, but I just can't do it. I don't know how I'm gonna make this work. And then I just thought, why should I let this stop me? You know, I deserve to go! I deserve to have the same life as everyone else. And thankfully I had found, after some trial and error with different products, I had found my Coloplast bags and I'd been, you know, able to go out and about and didn't experience any leaks and it did give me that confidence to think, yeah, I can actually go away. That was such a first for me. And I remember we all went to, the girls had arranged to go to this Beach Club place and I love my style and fashion and things like that. So I was beforehand planning these different outfits and you know, sort of like hot pant shorts that I could put over the two bags and how I could style it with different skirts… and there's a number of photos of us on that day and no one ever would've realised that I had this massive bag down to my knee or anything like that. And I just felt like, it was such a proud moment. I even feel like emotional talking about it, but it was just I could have missed out on my best friends' big celebration because of what had happened, and thanks to having the right products and having the right support from my stoma nurse, then I was able to do that and it just felt like nothing's gonna stop me. And because I've got these products, you know, it gave me the confidence to do that. Paul - It's just, I'm almost sitting here kind of in, and I'm not just being funny when I say it, I'm almost in awe at this moment in time. And I'm thinking, you know, as I say, cause you know, you were so, so young when you went through all of that, and as you said, you know, you had the two bags - one was this, you know, this big high output and I know that the majority of the listeners are stoma nurses to this podcast. So I think, you know, we don't have to describe what the high outputs like they’re big, they're really, really big bags. But I just wanna pick up on one of the couple of things that you said there. You know, you've mentioned a couple of times, and again, you can name drop your stoma nurse as many times as you like, that's absolutely no trouble at all. But, how do you feel that relationship has developed with your stoma nurse, you know, have you managed to keep the same stoma nurse throughout your entire journey? Deirdre - Yes, I feel like I wouldn't be where I am today if it wasn't for my stoma nurse. She literally changed my life, like sorry for getting a bit emotional about it, but I think it would just be a completely different experience if I had have had anyone else. She has been a friend to me. She's been there through seconds in… She's the one who helped me to accept the whole thing and like she's just done so many things. I actually attended her wedding a couple of years ago. Her name is Geraldine Gartland by the way. And she is literally like, she's just an angel on earth. Like the things that she did for me that were way beyond the call of duty, just changed my life. Some of the worst times I was having in hospital, she was there holding my hand. She was texting me whenever I was in really bad pain during the night on the ward, and I didn't get to sleep one wink. Geraldine used to, she had quite a long journey to get into work and I think she had to leave her house at like six in the morning or something, and she actually left at like half five in the morning just so she could come to get me a chai tea latte, I always remember, and bring it up to my bedside every morning before she started her shift. And having that support, like even on the darkest. On the nights in the ward when everyone else was asleep and I was in agony and thinking, how am I gonna make this story? I knew Geraldine was gonna be there. Paul - Thank you so much for sharing that story. It really does go to show the almost unsung skills of the stoma nurse specialist. You know, it's, you know, lots of times people do think of stoma nurses, as you know all we do is we go in and we change bags. You know, we take a bag off and we put a bag on and then we wander off again. But it's all those other skills of the stoma nurse specialist. And I think, you know, I can think of a couple of patients where, you know, they really have, I think sometimes touched me almost much as, I hope I've touched them in those hits. And it sounds like you had that kind of relationship with Geraldine, where it is just that you make that connection, don't you? Deirdre - Yeah, it was just even her manner, it was how she interacted with my family because when I was initially told, you know, really sorry, but you are gonna have to have a bag. And even my parents were thinking, it's never gonna come to that. No, this is that. And you know, our whole mindset was this was the worst thing that could ever happen. And Geraldine came in and just her nature, the way she approached the whole subject of having a stoma. She just completely changed our outlook on it and let us see that it was a positive thing. And even if I was experiencing problems, she would always take the time to go through, don't worry, like there's this as a wee solution. We can try this product, we can try these bags. And nothing was too much of a big deal for her. And it made me accept everything and think, I'm gonna be okay here. It's alright. I've always got Geraldine. Geraldine was actually there to hold my parents' hands when I was in emergency surgery when they didn't know if I would make it or not. And she drove down to the hospital that night, I think it was like one o'clock in the morning or something, like she did not have to do that. And the massive impact that she has made on my life is just, I can't even put it into words. Hannah - I mean, it's just… I've gone a little bit quiet because I've also gone a little bit emotional in the corner over here, sorry! Deirdre – Sorry, I didn't think it was gonna be like this, but yeah, she's just, I just value her so much and I'm just so lucky that she was assigned to me to be my stoma nurse. Hannah - I just hope Geraldine gets to listen to this and what a wonderful, wonderful nurse she is. Deirdre - She must have made a difference in so many people's lives and just, you know, it can be such, it's not just the physical side of having a stoma, accepting your new body image. It's the whole psychological impact it's having. And I'm sure most ostomates probably go through the whole ups and downs of feeling isolated, feeling totally different from everyone else in their lives and everything. Everyone goes through that, but with the right support, if I didn't have that support, I don't know what way I would've, you know, felt about my stoma and my body image and, you know, I don't know what impact that would've had on my, you know, myself and my mental wellbeing and Geraldine was just a key figure in really changing my life and making me into the grateful person that I am today. Paul - Wow, I think I'm trying to sit here and try and be kind of, think of some poetic words that I could say. I think just, wow! Just seems to be the word that I can just think of. Hannah - Yeah. That, that's about it. I think that you can just… wow! Deirdre - Yeah, I just, I feel like, you know, patients, you know, whenever I see patients on the ward and then if, if I can, whenever I'm in, I always try and, you know, go over to the bed side and talk to them and, you know, try and like maybe give a wee bit of any little like small thing that I can do that Geraldine helped me with, you know, cause it makes such a big difference to patients lives and it's such a scary time and having that support is just, it's just invaluable. And, you know, the way a stoma nurse interacts with the patients can be life changing. Paul - It is, and I think on exactly the same kind of topic in Coloplast Professional, we like having top tips. And I think, you know, as an expert by experience like yourself, somebody with those lived experiences. If you were to try and think of the biggest top tip you can think of to a stoma nurse or somebody who is gonna go for surgery and have stoma formed. What would be the biggest, and in your opinion, one of the most important things that a stoma nurse can do and somebody who's gonna be, you know actually going down to theatre? Deirdre: I think a big part of it would be having patience with the patient, if that makes sense? It's just because, I don't know from a stoma nurse's point of view, but when I was initially told as I said, you know, that I would have to have a stoma, in my mind, my family's mind, they thought, what? Like, this is the worst thing could ever happen. You know, I was in the ward with all these pensioners, like this is not real. How can this be happening to me? And the first stoma nurse that they sent in, they had said, this stoma nurse is gonna come in and show you some of the products. And you know, at that stage, someone is probably, you know, life or death sort of stage, they've been to hell and back, with the pain with managing all the symptoms. And when the first nurse came in, I think I was probably quite rude and I said, I was like, I can't even deal with this - get out! So like, I mean, apologies to that lady because I feel so guilty about that. But even, you know, from a stoma nurses point of view, even just to have patience with the patient and think, you know, probably you might come up against like hostility or someone you know, being really, they don't want to accept this and everything. But with the right approach and just being understanding and being patient. And do you know what Geraldine always had kinda like, you know, an upbeat kind of personality and nothing was too big of a deal, and I think that really helped me as well. I know that stoma nurses are really busy in hospital, but just taking that little bit of extra time with a patient to make them feel like - I'm valued. This is a big deal. And the stoma nurse knows that this is a big deal. I'm not just another number, I'm just not another patient on the list to tick off, right, you're done dusted, I'm away! You know, two minute interaction sort of thing. Because for the patient, it's just a whole new, you know, you feel so different from everyone. And the stoma nurse is the one person who really understands. So having that wee bit of extra time with the patient I think is really valuable and making them feel like, you know, I understand and you're worth me taking off your extra minutes of time to make sure that you're okay. That makes a big difference Hannah - I think that's a fantastic bit of advice, cause especially at the moment, I mean, it's well documented, we all know the pressure that nurses are under. But I think it's so important that as nurses, they remember not to let that filter through to your patients because, I say it's a vulnerable time. The last thing you want to feel is like you are being rushed at that moment. So yes, these nurses can be rushed and they can have minimal time, but the last thing you want that patient to do is know that cause you are already putting them, like you said, you were on edge instantly at that moment and you've got nowhere! Neither of you have got anywhere at that point! So I think that's a fantastic bit of advice to hand out though, is that little bit of patience with your patients. I think that's a really good little tagline! Paul - That's it, I think we've now got the tagline for the podcast is having patience with your patients. Deirdre, it has been an absolute privilege talking with you. I know I've spoken a bit more, but I think at one point I had to jump in because Hannah didn't have the ability to talk, I'm sure she was wiping a tear, a slight tear away from her eye when she was actually talking to you. And I think that you have such a positive, passionate approach to what was a really bad time. If you know, I think we can, we can safely say it was, you went through it didn't you, you know, and that sort of thing. But your passion, the, you know, the emotion that you talk with is tangible, and I'm sure that everybody listening to this podcast is gonna be so thankful for you sharing your story with us. Deirdre - Thank you for giving me the opportunity. Paul - It's an absolute pleasure. And I would hope that you come and be a guest on our podcast again one day. Deirdre - Oh, yes, please. I'd love to! We’ve only scratched the surface! Paul - So I think this is part one with Deirdre, so thank you , Deirdre - Part one of patience with the patient! Paul - That's absolutely fine, I'm happy to run a series. That's absolutely fine. Hannah - And just echoing what Paul said, thank you so much. Just listening to your passion, and for me, it was your courage as well that really came through and that's why I went, it's probably one of the few times I ever go quiet is when I'm emotional. So it's probably the quietest I've ever been on a podcast! So I'm sure the listeners out there are probably grateful as well for that, there'll be peace and quiet out of me for a change! But thank you so, so much. We will definitely be having you back and I promise I will have more tissues on standby! Deirdre - Yes, me too. I was not prepared there! Hannah - But thank you really from the bottom of my heart, Deidre, it's been an absolute pleasure. Really has, and really hope to speak to you again very soon Deirdre - Thank you so much. Thank you, Hannah. I appreciate the opportunity. Outro - Stoma and Continence Conversations is brought to you by Coloplast Professional. To learn more, visit www.coloplastprofessional.co.uk